Re: Secondary Progressive MS *n-Cait-

[Guest guest]

Cait, Secondary Progressive means that one no longer has flares, and usually nooptic neuritis, but that whatever one does have one must live with. Rapidly progressiveusually is the diagnosis given for more rapid progression, though the terminology is aboutto change. I have been on Betaseron, Avonex, and later, Copaxone. Now I am on nothing, though if a flare were to appear, I would be given a cortico-steroid. I think for methis means: no more optic neuritis, no more vertigo, just peripheral neuropathy. My neuro-logist tells me that I may NOT get any worse. My father, who also had MS, reached a point where he no longer had flares, was a bit numb, and did not get worse. He eventuallydied of old age at 98! "Hope springs eternal!"Love to you,nSubject: Re: Secondary Progressive MS *nTo: MSersLife Date: Sunday, July 17, 2011, 2:03 PM

n, I'm secondary progressive as well. No idea when I crossed the diagnosis level since I was only diagnosed 3 yrs ago and have had ms since at least 1979. I can't recall if you're on any meds or not? I'm the same as you in that my memory and cognition seem fine. My mobility has been affected to the point where I use a cane outside.

Question for you, are you doing anything particular to avoid the progression? ... hugs, Cait

Secondary Progressive MS

At this point in my life, my neurologist and internist are referring to my "Monster"as "secondary progressive," which does not mean that it is progressing rapidly,but that my peripheral neuropathy in my lower legs and feet is likely permanent--not a flare or "flair" as I called them--and that whatever happens from hereon out mostlikely will remain with me permanently.I am very fortunate as so far I have no memory problems, no cognitive impairment,and relatively little limitation to my mobility. The mobility problems relate primarilyto my having Spinal Stenosis, and this is expected as I am a survivor of poliomyelitis("Polio"), which I caught when I was 12 years old. Entirely apart from any other disease condition, I was born 6 weeks prematurely,and have shortened Achilles tendons and shortened tendons in the arches of my feet.So, I wear supports in my shoes; I also have one leg (left) slightly shorter than the right one, but I was just born that way.All in all, I think that MS has not impacted my life as much as other medical conditionsI have, e.g., arthritis, with four replaced joints and one repair (hips and knees)!Love to those who are brave enough to ask us these important questions,n, who does not give up easily...or quietly!

[Guest guest]

I've also heard the classification "Progressive Relapsing". Is that still a current classification? SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, July 17, 2011 3:05:05 PMSubject: Re: Secondary Progressive MS *n-Cait-

Cait, Secondary Progressive means that one no longer has flares, and usually nooptic neuritis, but that whatever one does have one must live with. Rapidly progressiveusually is the diagnosis given for more rapid progression, though the terminology is aboutto change. I have been on Betaseron, Avonex, and later, Copaxone. Now I am on nothing, though if a flare were to appear, I would be given a cortico-steroid. I think for methis means: no more optic neuritis, no more vertigo, just peripheral neuropathy. My neuro-logist tells me that I may NOT get any worse. My father, who also had MS, reached a point where he no longer had flares, was a bit numb, and did not get worse. He eventuallydied of old age at 98! "Hope springs eternal!"Love to you,nSubject: Re: Secondary Progressive MS *nTo: MSersLife Date: Sunday, July 17, 2011, 2:03 PM

n, I'm secondary progressive as well. No idea when I crossed the diagnosis level since I was only diagnosed 3 yrs ago and have had ms since at least 1979. I can't recall if you're on any meds or not? I'm the same as you in that my memory and cognition seem fine. My mobility has been affected to the point where I use a cane outside.

Question for you, are you doing anything particular to avoid the progression? ... hugs, Cait

Secondary Progressive MS

At this point in my life, my neurologist and internist are referring to my "Monster"as "secondary progressive," which does not mean that it is progressing rapidly,but that my peripheral neuropathy in my lower legs and feet is likely permanent--not a flare or "flair" as I called them--and that whatever happens from hereon out mostlikely will remain with me permanently.I am very fortunate as so far I have no memory problems, no cognitive impairment,and relatively little limitation to my mobility. The mobility problems relate primarilyto my having Spinal Stenosis, and this is expected as I am a survivor of poliomyelitis("Polio"), which I caught when I was 12 years old. Entirely apart from any other disease condition, I was born 6 weeks prematurely,and have shortened Achilles tendons and shortened tendons in the arches of my feet.So, I wear supports in my shoes; I also have one leg (left) slightly shorter than the right one, but I was just born that way.All in all, I think that MS has not impacted my life as much as other medical conditionsI have, e.g., arthritis, with four replaced joints and one repair (hips and knees)!Love to those who are brave enough to ask us these important questions,n, who does not give up easily...or quietly!

[Guest guest]

I've seen that classification on MS World, there are a few people that post there that are considered progressive relapsing.Tina

 

I've also heard the classification " Progressive Relapsing " .  Is that still a current classification? 

SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.

 

 

To: MSersLife

Sent: Sun, July 17, 2011 3:05:05 PMSubject: Re: Secondary Progressive MS *n-Cait-

Cait, Secondary Progressive means that one no longer has flares, and usually nooptic neuritis, but that whatever one does have one must live with.  Rapidly progressive

usually is the diagnosis given for more rapid progression, though the terminology is aboutto change.  I have been on Betaseron, Avonex, and later, Copaxone.  Now I am on nothing, though if a flare were to appear, I would be given a cortico-steroid. I think for me

this means: no more optic neuritis, no more vertigo, just peripheral neuropathy.  My neuro-logist tells me that I may NOT get any worse.  My father, who also had MS, reached a point where he no longer had flares, was a bit numb, and did not get worse.  He eventually

died of old age at 98! " Hope springs eternal! " Love to you,n

Subject: Re: Secondary Progressive MS *nTo: MSersLife Date: Sunday, July 17, 2011, 2:03 PM

 

n, I'm secondary progressive as well.  No idea when I crossed the diagnosis level since I was only diagnosed 3 yrs ago and have had ms since at least 1979.  I can't recall if you're on any meds or not?  I'm the same as you in that my memory and cognition seem fine.  My mobility has been affected to the point where I use a cane outside.

 

Question for you, are you doing anything particular to avoid the progression? ... hugs, Cait

Secondary Progressive MS

 

At this point in my life, my neurologist and internist are referring to my " Monster " as " secondary progressive, " which does not mean that it is progressing rapidly,but that my peripheral neuropathy in my lower legs and feet is likely permanent--not a flare or " flair " as I called them--and that whatever happens from hereon out mostlikely will remain with me permanently.I am very fortunate as so far I have no memory problems, no cognitive impairment,and relatively little limitation to my mobility.  The mobility problems relate primarilyto my having Spinal Stenosis, and this is expected as I am a survivor of poliomyelitis( " Polio " ), which I caught when I was 12 years old.  Entirely apart from any other disease condition, I was born 6 weeks prematurely,and have shortened Achilles tendons and shortened tendons in the arches of my feet.So, I wear supports in my shoes; I also have one leg (left) slightly shorter than the right one, but I was just born that way.All in all, I think that MS has not impacted my life as much as other medical conditionsI have, e.g., arthritis, with four replaced joints and one repair (hips and knees)!Love to those who are brave enough to ask us these important questions,n, who does not give up easily...or quietly!